Thursday, 21 November 2019

My Son's Deafness Changed the Way I See My Own.


Priscila Soares painting her self-portrait.
When my second son was born, he didn’t pass his hearing and screening test. The doctors told me it could be just fluids in his ears. I thought for sure that had to be the case because I’m the only one in my huge family who has a history of hearing loss. But my hearing loss isn’t congenital. 


It began when I was a teenager and I believe it was due to all the recurrent ear infections I had as a child. Even though Jason did have fluids in his ears, after further testing he was diagnosed as profoundly deaf. We did some genetic testing and nothing came up that could relate his hearing loss to mine. One of the major differences between his diagnosis and mine was that his hearing loss came before he learned how to communicate, but mine didn’t. Another was that his hearing loss was a lot more profound than mine. 

Aside from that, I believed that due to my own experiences, I could be a parent he could truly relate to, helping him through the struggles that can come with having hearing loss. Related:​ How I Found an Audiologist Who Could Hear Me Little did I know then that putting all of my energies towards helping him out would unleash a whole new path of discoveries in my life. Having teachers, professionals and advocates dedicated to him from the moment he was born was a grand teaching lesson to me. 

It made me see how little if any of that I received when I was first diagnosed and how many years I had navigated trying to work around my hearing loss instead of working with it. I noticed how many choices I had made in my life out of fear of being made fun of, laughed at or ridiculed. I chose a career in isolation, where I worked as a designer from home and only dealt with clients on a one-on-one situation. Every choice I made was subconsciously guided by how comfortable or not I was with my hearing loss. Jason didn’t know the difference. He was born deaf and that’s the only world he knows. He always had professionals teaching him sign language, speech, how to self-advocate, become more empowered and independent. He is so much more comfortable with being himself that he became my guide and my example just as much as I have been to him. 

As I got more involved with the community, meeting other families, adults and children with hearing loss, caring professionals and teachers, a desire to do a deeper inner investigation of my true calling began to grow. I realized that everyone’s stories and paths were at the same time relatable and unique. We could all learn from each other. All the things I have gone through had the power to help others who were finding their way along similar paths. 

After years of investigating and at the same time making sure my children were old enough to be more independent, I finally took the courage to combine the two things I have become most passionate about: doing art and advocating for people with hearing loss. Art has always been the best way I’ve found to process what’s in my mind. The difference this time is that I was going to allow myself to share it with the world, even though that was one of the scariest things for me to do.

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